Madison ended her second year of preschool, and even with it’s ups and downs, I would say she has really had quite a successful year. The biggest change I’ve seen in Madison is her ability to deal with her frustration. She had some hard times last fall, with some bad temper tantrums and just seemed to be angry with the world. I think she began understanding her limitations and wasn’t too happy with the reality of her situation. Since then, she has learned how to communicate better, and has gained some new skills that really allow her to get where she wants to go. She has enough frustration to keep her motivated, but not too much frustration where she just gives up.

We are currently in San Jose again for another month of Conductive Education. If you would like to read about our experiences here, you can click below:

We went through rounds of assessments and IEP meetings this spring to get Maddie situated for next year. She will continue at the same preschool, which she LOVES, and we are going to try to mainstream her into the kindergarten class at this school for a small part of the day. I am still feeling very insistent that this girl needs to be around typical peers. She LOVES playing with everyone, and I think she needs the modeling of typically-developing children. The Kindergartners are not exactly her peers, but for now it is close enough, and really our only alternative. Unfortunately, our school district offers only one program for delayed kiddos, not giving us much room to find something that is just right for her.

We had lots of wonderful news during Madison’s assessments this spring. This little girl is doing so much. Some of her assessments came back as AGE-APPROPRIATE and even a few were above her age level! She knows many of her shapes, colors, and her receptive language skills continue to be one of her greatest strengths.

Physical Therapy

Madison received a new walker a while back, and we were so happy to get it because she seemed so much more stable in it. However, she is developing some pretty bad habits in it. She continues stablizing herself by locking out her knees and hyperextending them. This could do some pretty bad damage.

If you look at that picture on the top of the page, though it is a beautiful picture and my most favorite picture EVER, Madison is clearly displaying all of the things going wrong with her legs. See how her jeans are popping out the wrong way at her knees? Yes, those are actually her knees going backward. Also, you see that she is standing on her heels. Kind of cute in the picture, but that is how she walks - on her heels. Not good. No complaints about that smile though!!!

Madison also recently got a CRAZY new pair of braces that go all the way up to her thigh. These are called KAFOs. They are hinged at the knee, which is to help with the hyperextension problem. Amazingly, she adapted to these quite well. They can NOT be comfortable, but she puts up with them. Unfortunately they really aren’t taking care of the problem. She is actually overriding the angle, and somehow amazingly still pops her knees backwards. They also prevent her from crawling well, and she can’t pull herself up into anything while she wears them. They are quite limiting. Also, because she strikes her heel so hard down when she walks, she has actually cracked the plastic on the heel twice on one side. Not good.

Lately, I truly began wondering if Madison's legs are even meant to be walked on... Watching those little legs move, I sometimes think that perhaps they just weren't made for walking. I am not giving up hope, but I just started to worry that perhaps we were doing more harm than good by forcing her to walk if perhaps she wasn't even meant to. This thought terrified me. I told her PT my concerns, and I think everyone has had this thought about Madison at one point. However, the alternative is just not acceptable. Her walk might not be pretty, but at least it is something. If we just decide to not work on her walking that will show her that we have given up on her. I think to inhibit her from standing and walking at this point (to save her knees) could be detrimental to her. I worry tremendously about the damage she is doing to her knees, but we are working on that, and hope to come up with a solution on how to let Maddie walk without destroying her beautiful little legs. Of course our dream is to have Madison walk independently some day, but for now, if she could just get around productively in a walker we would be thrilled.

Not to downplay what she is doing in her walker, however. Though she is not walking correctly, this girl has some amazing stamina and strength. I continue taking her to the mall to practice walking (she loves that place!) When we used to go, it could take her a good hour to get to the water fountain. The last time we were there, she got there in about five minutes! (She also carries a purse now, with pennies in it for the fountain, which is the cutest thing I have ever seen...) We need to remember and understand these huge improvements. She works so hard and is truly an amazing little girl. She WILL walk darn it!!!

Speech Therapy:

Maddie has had a surge in her sign language, and it has been very exciting. If you are interested, here is a list of all of the signs that she knows:

She continues to vocalize a lot more, and her "repertoire" of sounds keeps expanding. We have been trying to get Madison a new communication device, and we are excited to say that it is probably on its’ way!   Now this isn’t just a little button you press that says "sissy". This is the big daddy of communication devices. It looks like it will be covered by our insurance, which is HUGE, since we really couldn’t afford an $8000 piece of equipment at this point. Yes, $8000. It is actually a computer and it does some amazing things. If you’d like to take a look, you can read about it at (yes, we picked the pink one!):

Neurology:

Madison has seen the neurologist several times this last year. She has a new neurologist who seems to have a better repoir with Madison, and that has been refreshing. He is a good listener and really seems to understand Madison and her conditions. He recommended several other tests last December, and unfortunately (or fortunately, in some cases) all of the tests came up negative. This just means we have no new answers. We had talked about the possibility of starting a medication with Madison, perhaps to ease some of her "extraneous" movements. We struggled with this decision a bit, but then realized that if there is something out there that might help her and make her life just a little easier, then needed to give it a try. The medication we decided to try had limited side effects, and was supposed to very safe to try for a short time. So we gave her this medication, and unfortunately, it just made her TOTALLY STONED! Her movements definitely were more calm, but that was because she just became a complete noodle. She wasn’t so wiggly anymore, but she could hardly sit up, and everything she did seemed to be in slow motion. She slept for most of the day, and it was really quite pathetic. This is not the result we were looking for. However, we tried again with lower doses, and have had better luck. After many trials and errors, it seems to have very few sleepy, flopsy side effect if we give it to her at night, and only 1/4 of the original dose. It is hard to tell if it is truly working. If we don’t give it to her, she definitely seems more "twitchy" throughout the day. Her OT noticed that her hands seem to be much more accurate when she is on the medication. Fortunately, it is not a medicine that is not dangerous to stop, and is not dangerous if you accidently miss a dose. We still aren’t exactly sure how we feel about medicating our little girl, but for now I guess we are okay with it...

Genetics:

We saw the geneticist again in the Spring, and we were able to have Madison participate in a test that is extremely new, and quite a breakthrough in genetic technology. This test was supposed to confirm whether Madison’s condition really is a genetic disorder. Because her MRI was clear, most of the Doctors have been assuming that her condition is a result of her chromosome translocation, but that really was just a guess.

I was worried that if we are calling Madison’s condition a genetic disorder, that her Cerebral Palsy diagnosis might be taken away from her. Though that sounds like that might be a good thing, it really is not. We need that diagnosis for some of the amazing services she is receiving, and without it, her services might be dropped. The geneticist and neurologist assured me that no matter what, we can describe Madison as having CP because she does, in fact, have a huge problem with her muscles because her brain is not sending the right messages. That is what CP is. Many would argue, though, that with no evidence of brain damage, CP seems like an odd diagnosis. To have a diagnosis of CP, though, there definitely doesn’t have to be evidence of brain damage.

HOWEVER... The results from Madison’s genetic test came back and didn’t help us out one bit. This doesn’t mean that Madison’s condition is NOT a genetic disorder, it just means that we can not confirm that it IS a genetic disorder. We were disappointed when we found this out. It really wouldn’t have changed things, but it would just be so nice to have an ANSWER. We are just as clueless now as we were three years ago as to why Madison is the way she is. I suppose someday we might just have to accept the fact that we might not ever get the answers that we so desperately want. Madison is just uniquely Madison and for some reason, this is just the way she is supposed to be.

We look forward to the next school year for Madison, and feel hopeful that she will continue to make such fantastic progress. We try not to worry about the future, and are trying really, really hard to just take it one day at a time. Our girls continue to be happy and healthy little wonders and we couldn’t ask for much more.